Concerned newbie

[paz833]

I've been having strange symptoms for years - numbness/tingling of feet, leg, arm, fingers and recently in my face with swelling and numbness in my tongue. I've also experienced mental "fogginess", vertigo, have had two herniated discs in the past year and a half with no real explanation for a cervical herniation at C5/6 that sent me to ER unable to lift my left arm and with pain/numbness/tingling in arm & fingers (I thought I was having a stroke, but bulging disc was the Dx). After a trip to urgent care a few weeks ago when my face and tongue became numb and a new doctor reviewed my history, an MRI of my brain revealed a "mild" Chiari 1 malformation - 6 mm on the left, 5mm on the right. My doctor is referring me to neurologist & NS but while I wait until late September for the appointment, my left leg numbness/tingling and weakness has not subsided and I'm now using a cane to keep my balance. Yesterday I experienced a horrendous headache that started at the base of my skull and wrapped around the side of my head into my left eye causing a terrible ringing in my left ear and giving me a feeling of pressure like when you jump into a pool and water rushes up your nose/into your ears. The initial severity passed after just a few minutes, but left me with a headache and just exhausted. Prior to the numbness and tingling in my face and swollen tongue that prompted my visit to urgent care and the subsequent MRIs, I had been seeing a chiropractor, thinking that the symptoms were related to my disc issues - I'm worried I may have caused my current symptoms with chiropractic treatment. I've had similar "episodes" over several years of neck, shoulder, and back pain, numbness, tingling, weakness of limbs, hands and feet, vertigo, etc. that have gone undiagnosed because they tend to disappear - sometimes with steroid treatments, sometimes physical therapy and massage and sometimes they just go away so I often wonder if it's the passing of time rather than treatment that's helping. Other times I worry that it's all in my head since no one could ever seem to find a reason for the symptoms. Doctors for years have opted for a "let's wait and see if it happens again" approach after doing rounds of blood tests and neurological testing and finding nothing substantive. My MRIs in the past couple of weeks offered the first possible explanation in the Chiari 1 malformation but several friends who are doctors that I've talked to about this have said it could be what's causing symptoms but may not be - I'm really frustrated, confused, and worried. I have a lot of concerns and a million questions but I'm hoping someone can give me insight on a few that feel most pressing at the moment: 1. Can Chiari 1 symptoms come & go over years? 2. How likely is it that a mild Chiari 1 malformation could be causing these types of  symptoms? 3. Waiting until mid September for a neuro appointment is worrying given the loss of ability to use my leg normally which makes it tough to walk - if it is the Chiari 1 causing the symptoms, could my leg symptom become permanent or could it pass like it has in the past (it's never lasted 3 weeks which is where I am today)? Any insight would be helpful and much appreciated.  

[selmaS]

  When I went to Drs some of the "symptoms" they asked me about  were odd to me as well as I would not have called them by the same name...I did not think of them the same way as the description so it seemed as tho I did not have that many Chiari symptoms....at first.

I really think they need to change the way they ask about symptoms....lol...

[paz833]

Thanks, Resa. I am interested in your overall opinion of the surgery (though I'm hoping that's not the direction I'm heading). Are the characteristics of your CM very different than mine? I'm just curious - I know size is not supposed to be a determining factor, but I'm hopeful my symptoms will be connected to a different cause. Because of the mild disc bulges in my lumbar and cervical spine, my family practitioner is suggesting that the discs are more the problem than the CM and that maybe a steroid injection would alleviate the symptoms (oral steroids haven't alleviated the leg and finger symptoms I'm having, though there is some improvement in the numbness/tingling in my face and tongue - it comes and goes in my face, but my tongue seems back to normal). I have a difficult time grasping why the symptoms occur simultaneously (the numbness/tingling/pain in different parts of my left side - leg, arm/fingers, face) if they're not actually connected.  

[Resa181]

Hi, my name is Resa.  You have described 90% of the symptoms that I had the 1st time I saw my NS.  I described the headache as my main symptom b/c it had progressed to the point that it had overshadowed all the others and was affecting my BP.  The pain level was driving my BP to such a high degree that my family GP was afraid I would stroke.  But in addition, the headache was in the base of my skull, I was dragging my right leg, my hands and feet were numb and tingling, I was nauseas and my upper lip was numb and my tongue felt swollen but that was b/c it was also feeling numb.  After 2 surgeries that I can tell you about, if you are interested, I still have migraines and some numbness and the numbness is part of the "aura" that lets me know when a migraine is coming.

[paz833]

Thanks for your feedback and the kind welcome.

@selmaS: What you said about being so used to some symptoms that they seem "normal" to us has really occurred to me since I received the initial news. My doctor kept asking me about my headaches and seemed puzzled that it wasn't my major complaint, but with the disc problem in my neck, I've not really thought of my pain in that region (base of the skull) as a "headache", but rather an extension of my neck pain - which has become very "normal" for me even though it is at times, significant. "Headache" just isn't how I would have described it. Frankly, at the time, the head pain (which I thought I could attribute to a clear cause which was a disc bulging) was less worrying to me than loss of ability to walk without assistance (which could be related to a disc problem, but combined with the numbness and tingling in my face AND the numbness/tingling/weakness in my fingers became more disconcerting than anything else). The symptoms just seem so numerous and all-over-the-place that I've honestly felt the need to zero in on what's most disturbing rather than trying to cover them all at a Dr. visit. Of course, that was before I knew about the Chiari. hopefully a specialist will bring some more clarity to it all. Thanks for your kindness.    

[selmaS]

  Hi and welcome to the Chiari forum.

A Chiropractor is not a good idea for those with Chiari., it can not cause it, but can cause symptoms to flare...sometimes we have them but since they can cycle we do not notice them and most times are so use to them consider them "normal".

It is possible you are in a flare of symptoms....and in time they may calm down and you may even forget about them for a time, until they flare again.

Make sure you find a true Chiari specialist and have more testing to see how your Chiari is affecting your overall health.

[kristy12]

Swollen tongue is not a chiari symptom. So probably you may suffer from an autoimmune disorder, judging you responed to corticosteroid therapy. This however does not exclude the chiari. Symptoms may well be the results of several disorders. Sometimes, autoimmune disorder causes ptc which in turn may herniate your brain down to the spine.

[Red_Star]

Excerpt from Chiari Australia - Frequently Asked Questions:

"2. Does size matter?

-The definition of chiari used by most doctors is that the tonsils need to be herniated at least 5mm to be classified as chiari. There is no correlation between the length of herniation and symptoms or prognosis.  However there has been new research which focuses on the Chiari 0 where there is no herniation as seen in classic Chiari, but that the tonsils block the CSF flow as much as Chiari 1 causing the same issue.

***

Excerpt from Mayfield Clinic - Chiari Malformation...

"Cine MRI is a special MRI study used to observe cerebrospinal fluid (CSF) flow. With each heartbeat, CSF is forced out of the ventricle of the brain, into the cisterna magna, and down the spinal canal. When the heart relaxes, the CSF flow reverses. The movie-like cine MRI captures the fluid movement (Fig. 5). The test can determine if, and by how much, a Chiari is blocking the back-and-forth flow of CSF between the brain and spine."

[ChiariChild]

I was diagnosed with a Chiari Malformation in February. I have suffered numbness and tingling in my hands legs and feet. I don't know everything about CM but I do know your symptoms are those of CM. I would get a referral to a NS to check to see if you need surgery or not. CM can cause a lot of damage. I don't know where you are from but look for a NS who knows about Chiari. There are also other things that come with CM.. EDS, POTS, Tethered Cord. There are many groups on facebook that can help you more than I can. Good luck and will be praying for you!